Touched by Lyme

TOUCHED BY LYME: “Why I stopped hiding my illness”

Guest blogger Sarah Israel tells why, after 10 years of silence, she started speaking up about Lyme disease.

By guest blogger Sarah Israel

Last year, after being sick for over 10 years, I began sharing about my disease. I am a private person and until last May, I only gave specifics of my illnesses to those closest to me. I did it to protect myself. But mostly, I now believe I did it because of my pride.

I have always taken very good care of my physical-self, working out and eating healthy. Having people know that I was sick embarrassed me. Plus, many of my diagnoses and the treatments that come with them are topics that do not belong in civilized conversation. It was never something I was comfortable sharing.

Every few years I would get a handful of diagnoses and begin treatment, but I was still sick despite my multiple doctors’ best efforts. Finally, in June of 2012, I was diagnosed by one of the leading Lyme Literate Medical Doctors (LLMD), as having Late Stage Chronic Lyme Disease and several co-infections, including Babesiosis and Bartonella.

This diagnosis of Late Stage Chronic Lyme Disease (CLD) was like an umbrella–it covered every single illness I had ever been diagnosed with (see list below). CLD is known as “The Great Imitator” for mimicking over 300 diseases such as MS, ALS, Parkinson’s, Alzheimer’s and Rheumatoid Arthritis, to name a few.

Here is a list of the diagnoses I received over my lifetime that were caused by CLD:

Relieved that I now had a reason why I was not getting any better from previous years of treatment and three pelvic surgeries, I began telling my local doctors the ‘good news.’ I quickly learned that a diagnosis of CLD carries negative connotations and many doctors are skeptical. Some told me it does not exist, others that it does not exist in the South (although research has proven otherwise). I was written off by most people, some friends telling others that my disease was not a big deal and I was just being dramatic and craving attention.

I became very isolated, partly due to the heartbreaking reaction of others to my diagnosis but mostly due to the nature of the treatment. The protocol to treat CLD is lengthy and actually makes you much worse before you get better. My life was filled with darkness and depression, and I could barely get out of bed to go to the bathroom. I would have to get back in bed to rest after a simple act of brushing my teeth or washing my face. I was in constant, agonizing pain. I would have seizures, pass kidney stones, and go in and out of consciousness all in one day.

These were the darkest days of my life. My brain was so foggy that I could not think straight, much less walk straight. My short-term memory was shot. I wondered if I was going crazy. I was desperate and had to quit treatment for a few months. I was having severe reactions because the antibiotics were killing off the spirochetes faster than my body could detoxify them. The kill-off produces toxins to be released into your system, and if the amount of toxins gets too high, it can wreak havoc on your body and even lead to death.

I slowly came back into the light after putting the treatment on hold. An Ayuverdic specialist helped me get my body back in balance. I began Lyme treatment again and this time, I became obsessive about detoxing. I still consider it my full time job, as it requires total commitment.

In May, Lyme Disease Awareness Month, I watched a speech by Real Housewives of Beverly Hills star and former model Yolanda Foster regarding her battle with Lyme. It made me cry with frustration that there are so few advocates for Lyme disease with celebrity as a platform. (Most celebrities with Lyme disease do not go public with their battle.) Then it hit me: instead of continuing to hide this illness from others, I needed to advocate. I did not have a platform to be heard by millions like Yolanda, but I have Facebook and a blog and I, too, can reach people.

I started by posting educational information for Lyme Awareness on Facebook. The love and support I received was completely overwhelming! The South is severely lacking in Lyme advocates, so I was emboldened by the initial response of support to try to fill that role. I joined an amazing organization called the Alabama Lyme Disease Association (https://www.facebook.com/AlabamaLymeDisease). It started off with a few Facebook posts and then my blog.

I would be selfish not to speak for those infected who do not have a voice. I have met so many Alabamians who have CLD but cannot afford the treatment. The most important thing right now is for people to learn about Lyme disease – to know that over 300,000 people become infected on a yearly basis, and to know that for the most part the government is ignoring it and insurance companies will not touch it since the treatment costs are so significant.

Treatment for CLD is aggressive and lengthy. It is a grueling journey—one that has at times left me bedridden, unable to think or speak, and in a pit of total darkness. Because of how torturous treatment is, along with other factors, such as isolation, the suicide rate in CLD patients is high. Most do not commit suicide because they are depressed—but because it is the only way to escape the physical pain and mental anguish you experience.

Invisible illnesses are hard to understand, and most people’s natural reaction is to back away from the unknown. I pray that the people who read this that have their health will gain a better understanding of how to ‘handle’ it when a person in their life becomes sick…not necessarily with Lyme but with any other disease that you cannot see with the naked eye.

(Excerpted from “One Year Later: Why I Quit Hiding My Disease” on the My Scoop website.

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23 Comments

I am so proud of my daughter, Sarah Israel, and her sister, Julia, for coming forward to discuss their illness with chronic Lyme disease. I hope their blog posts will provide information and also show those who are not ill how to be compassionate to the less fortunate. Thank you for publishing Sarah’s latest blog post.

I am so glad she shared it too. I thus far am diagnosed for the 2nd time with RMSF. I see the LLMD in Feb. Everything she says in this except rings so true with me. The doctors are a night mare when you mention ANY tick borne disease or sickness. I am a member of a wonderful FB group called Survivors of RMSF and Lyme. If it were not for them and some friends (like the one that sent me this link) I fully believe I would have cracked up by now.

Question. Thank you first of all for sharing your story. It’s very devastating and a very lonely disease… I just started a 30 day in-home IV treatment and in reading through your post, in regards to herxing & needing to stop, you mentioned detoxing.. I don’t know anything about this detoxing. Can you perhaps share a link? I also couldn’t find that group on Facebook.

Thank you for sharing your personal battle, I.was diagnosed with an auto immune cindition, hashimotos 6 yrs ago, and have had lyme symptoms 2 yrs before that, I believe now that I contracted lyme 8.yrs ago, and have not started treatment yet. This discovery on my own mindset and time researching my symptoms has allowed me an answer and although it’s a daily battle with slight and severe altering symptoms, I’m glad to have found others and this page to help me feel supported more.

Thank you for sharing your courageous story. Our stories and timelines are so similar it is scary. It has been heavy on my mind to start blogging beyond the Facebook sharing and after reading your journey, it may be time for me to start. Best wishes to you and good luck on your continued healing journey. Be Brave. Be Strong. Be You.

Thank you for sharing your story! I’m so thankful you decided to talk about your journey. There are so many similarities with the stories of Lyme sufferers, but it always blows me away just how similar they are. I could have written this post. When you write about your struggle, others will feel brave enough to talk about their struggle and in the end that is what will bring about the most awareness to this devastating illness! I feel that because of our courage to raise our voices, awareness and change will be coming soon to the medical community. I can only hope and pray. Thanks again for the reminder that I am not alone… Many peace and blessings to you!

When you wrote ” I could have written this” I was right there beside you thinking the same thing. How much longer will it take for the Medical community and Government regulated insurance companies. ( Not sure if I worded that correctly) The insurance companies need to start covering Lyme disease patients. Brain fog. I just agree with you about how many people have said the same thing over and over. Our stories are exactly the same. Thanks and best wishes to you and all of us.

Great story. Thank you so much for sharing your experience with Chronic Lyme. I too suffer from it and am currently in treatment with a reputable LLMD. I was also diagnosed with Idiopathic Hypersomnia and thought that is what I had for about 9 months before diagnosis with Lyme disease. I was getting through the day with my toddler twins by taking Provigil and Adderall that the neurologist had given me. It was so hard and I felt hopeless. Lyme is horrible but I am happy to finally have an answer and being getting treatment for it. By sharing your story, you are doing so much good….thank you so much! God bless you.

Hello Laura, my name is Lois and I’m reaching out to you today because my daughter, 24 is currently feeling very similar to the Sarah Isreal who wrote this story, and when I noticed your comment and read which route your neurologist and you decided to take, I knew that you would be the perfect person to help because I have been doing a lot of research on the topic due to her lack of energy, lack of strength to work, etc.. and I have been looking into provigil and adderall as a matter of fact those are the two medications that I’ve narrowed in on to be most beneficial in this matter. We are considering speaking to the doctor about starting them on top of Doxycline 100mg a day. But I haven’t heard from any one who’s taken this combination with Lyme disease and that’s why I would really appreciate a response on how those two are working for you. Some signs of adhd are prevelent. She just wants to live strong again. Hope to hear from you soon. I know I’d love to see my baby girl up and lively.

Lois, Do you have a family member named Luke? I saw that he messaged me back in December with a similar question. I found Adderall to be the most helpful, 10-20mg in the morning. Before I knew I had Lyme, I took Adderall 3x/day to get me through the day. Now that I am fully treating the Lyme, the hypersomnia and fatigue are improving quite a bit. Provigil helped promote wakefulness but for me, it gave me an unbearable headache. Hopefully your daughter won’t get that side effect. Doxy 100mg is too low to treat Lyme disease. I would recommend finding a Lyme Literate Medical Doctor through ilads.org Good luck to you. I know how hard it is having these illnesses, I cannot imagine seeing my children suffer as well. 🙁 I wish you the best.

I have had Rocky Mountain Spotty Fever for eight months. Most people do not see RMSF or Lyme as ongoing diseases. I have days when I’m so tired I cannot function. One website said there were approximately 1,000 cases per year of RMSF in the U.S. How did I get to be so unlucky to be among that group, considering the millions of people in the U.S.!

Thank you for sharing your story.It is not easy to start talking about it,even I was diagnosed very early,like in two weeks,i have chronic lyme with co-infection with babesia.And all symptoms you describe very similar to what I have,and what scares me the most when my brain is getting foggy and short memory loss and despite the treatment it is on and off,it is really depressing and sometimes I feel like I can’t see the light at the end of tunnel.Thank you very much again and again for being brave and shering your story.

Thank you so much for posting your story. I too have gone through much of the things that you went through. I live in Rhode Island and although I live right next door to “Lyme, CT”, there are no doctors that believe in Chronic lyme. There is one, who I believe is facing charges, and two nurse practitioners that treat lyme. Otherwise, Nothing. Stay strong, you have many with you in the fight.

I commend you for speaking up. I just recently started speaking up as well. I was tired of people not understanding what was going on with me. And I had also passed it on to my son when I was pregnant so this was another opportunity for me to educate and stop being quiet and stoic. I enjoyed reading your post. If you are interested, I have info about Congenital Lyme, which my son has, at http://www.lemonsoverlymes.com.

2 Corinthians 12:9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.

I only knew one person with AIDS in my life, but I know countless of Lyme victims that I come into contact accidentally in the 3 surrounding states (NY, NJ, & CT). The REAL numbers have to be mind blowing & must be well beyond 300,000!!!!!

Sarah, another Sarah here who’s had lyme before lyme was discovered 1980. Lyme comes with mycoplasma and/or serratia. Serratia is a pink bacteria you will see growing in the bath fixtures, if you have it. Myco is nano sized and no good tests for it. If 75% are now thought to have mycoplasma, this explains the great lyme farce. Myco is urease positive CAUSING those kidney stones. I have them too. Totally ignored by docs. When ILADS says “it hides from the meds causing relapse”, I think they know darned well that its the kidney struvite stones doing this. They are non-dissolvable (struvite/antler stones) and require surgery. They cause relapsing UI infections. Most UI tests will show trace blood and/or epithelial (skin lining) cells, as they are sharp stones. Docs ignore this too. So long as docs DONT remove these stones, the lyme and cohorts will never go away – they will just recur. Start with checking out chanca piedra herb tea, (south american, breaks struvite stones into sand WITHOUT surgery), and alternate for other stones types is apple juice, apple cider vinegar (best in lemonade to cut taste) or lemonade DAILY at least a glass if not two. Other common-er stones dissolve in the above; struvite from bacteria stones, need chanca tea or surgery. Begin there. Been there, done that, except maybe 25 years battling for my ssa bennies (have no clue how you did with that) only won by 15 years total non-employment. (bunch of rats). IDSA are idiots, union that protects docs; they know full well, struvite stone presence causes all infections to relapse. Their job is to word things best to avoid med lawsuits. Good luck

I have Lyme Disease as well. I feel so incredibly fortunate that it was caught early by an amazing LLMD that I found here in Utah… where “Lyme Disease does not exist” either. He thinks that I contracted the disease fairly recently… possibly last April. The road to recovery will take anywhere from 8 months to 2 years, but I am so happy to just “be on the road”.

Thank you for bravely telling it how it is. The double indemnity of battling this disease coupled with the controversy over whether it even exists is difficult to bear. Living with Lyme and co-infections is agonizingly painful until proper treatment is obtained and the journey is so long. Bless your heart for shining a light on this poorly understood condition.

Thank You for sharing. It is high time I write and share my story as well. I am coming up on almost 30 years with Lyme Disease. I was diagnosed (I use that term lightly) when I was 19, and I turn 46 this year. My diagnoses have included but are not limited to: Lyme Disease, Mitral Valve Prolapse, Fibromyalgia, Dysautotomia, Costochondritis, Kidney Stones, UTI’s, hypothyroidism, anxiety, depression, etc. They thought I had MS, chronic fatigue syndrome, a brain lesion, etc. I, too, pride myself on being “healthy” and living a healthy lifestyle. Newly moving though menopause has exacerbated so many chronic symptoms and caused me to experience many more. I have suffered enormously, if the truth be told, and yes the fact that so many others minimize and/or dismiss it does add to the pain. I need to get this story “off my chest”–literally and figuratively it seems–for myself and for so many others who continue to suffer. I’m a writer, and this is the one thing I have always avoided writing, partly because I feel like once I begin I’ll never be able to stop and partly because I just want to be part person without an illness. Well, my body is screaming that it’s time to bring this nightmare to Light, as part of the healing.

Really inspirational Sarah. I too have suffered enormously with Lyme. I have a very good LLMD thank god, because it is truly a nightmare people can’t comprehend until they’ve been through it. Working on finding a way to help others of us. A cure takes a few years, minimum of two. Rife, strict diet and herbs/antibiotics per his words. I hope you are doing better.